Hi all! I was looking for anyone who's child was told that they needed to "undo" their child's surgery? My daughter had her nerve graft at Texas Children's Hospital, and then did a muscle transfer and tendon transfer locally. We saw Dr. Nath (who we do adore as he was part of her surgical team for her nerve graft) 2 years ago, and he said that the surgeries were archaic and he needed to undo what was done and do the mod quad and then later the bone surgery. has anyone been in this same situation? were your surgeries successful? What about the age factor? When she was born, the age factor was always pressed upon us.
Need some friendly and unbiased advice please!!
Undo my daughter's surgeries?
Re: Undo my daughter's surgeries?
I have not heard of actually "undoing" a surgery but that being said my daughter has had several surgeries that did not work and some for the same issues.
My suggestion is to get another opinion if you are uncomfrontable with the suggestion. It can't hurt.
My daughter is now 13 and has had surgeries by Dr. Nath and I love him dearly but I have also taken her to Dr. Kozin for second opinions. They have both always recommended the same thing for her so far but that may not be your case.
If it's to much for you to go to Shriners, you can e-mail Dr. Kozin and ask his opinion.
There are also other doctors listed on the medical resource page here, contact as many as you feel you need to.
Best of luck.
Angie
My suggestion is to get another opinion if you are uncomfrontable with the suggestion. It can't hurt.
My daughter is now 13 and has had surgeries by Dr. Nath and I love him dearly but I have also taken her to Dr. Kozin for second opinions. They have both always recommended the same thing for her so far but that may not be your case.
If it's to much for you to go to Shriners, you can e-mail Dr. Kozin and ask his opinion.
There are also other doctors listed on the medical resource page here, contact as many as you feel you need to.
Best of luck.
Angie
Re: Undo my daughter's surgeries?
The mod quad is based on two "archaic" surgeries that have been performed for YEARS!! They don't call them the "gold standard" for nothing.
It sounds like you need further opinions.
btw, my daughter just had surgery to fix what Nath did to her.... so it works both ways.
more than anything, the focus of what the docs want to do has changed. When my daughter had the mod quad almost all of the docs were looking at external rotation as the mother lode. Unfortunately, she is not the only one who gained external rotation at the expense of internal rotation....the ACR adapts to this balance very well. So, one day we hope to give her back some of her internal rotation. Until the injury ceases to occur, we will continue to have to do research and ask so many questions about the pros and cons of ALL surgeries.
I go to 3 docs before we do anything.
check out the medical resource page, email the docs...I have always found them to be very responsive.
good luck, this is a tough one,
claudia
It sounds like you need further opinions.
btw, my daughter just had surgery to fix what Nath did to her.... so it works both ways.
more than anything, the focus of what the docs want to do has changed. When my daughter had the mod quad almost all of the docs were looking at external rotation as the mother lode. Unfortunately, she is not the only one who gained external rotation at the expense of internal rotation....the ACR adapts to this balance very well. So, one day we hope to give her back some of her internal rotation. Until the injury ceases to occur, we will continue to have to do research and ask so many questions about the pros and cons of ALL surgeries.
I go to 3 docs before we do anything.
check out the medical resource page, email the docs...I have always found them to be very responsive.
good luck, this is a tough one,
claudia
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nkjacoby
- Posts: 81
- Joined: Sat Jun 21, 2008 9:06 pm
- Injury Description, Date, extent, surgical intervention etc: Nicholas is 11 years old and his birth was complicated by a severe shoulder dystocia resulting in a severe LOBPI. He has had 5 surgeries to date with very little improvement. His left arm has never fully gained any functional use and has been completely flaccid until his last surgery. It now sits at a more natural position, but he is still unable to use his arm. However, his hand function was never limited until after his most recent surgery and is now completely limited due to an ulnar nerve entrapment. He is getting ready to have his 6th surgery in April to free the ulnar nerve from his last surgery. He is an amazing young man who never gives up on his dreams. He is my HERO!!!
Re: Undo my daughter's surgeries?
My son is now 6 years old. We have had four surgeries to date. I haven't heard of undoing surgeries and we began seeking treatment in 2003. I agree with other posters that you perhaps should get a second opinion. I am sure you will make the right decision. We have seen Dr. Waters at Children's Hospital Boston and I have heard that Dr. Kozin is a fantastic physician. Good luck to you.
Mom to Nicholas 11 LOBPI, Dawson 7, and Kalyssa 5
Re: Undo my daughter's surgeries?
thank you for your input!
Audrey
Audrey
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Tanner's Mom
- Posts: 288
- Joined: Sun Oct 03, 2004 12:29 pm
Re: Undo my daughter's surgeries?
Getting several opinions is key and be sure to question the heck out of every doctor you see. I had a few pages of questions and saw several doctors before making any final decisions. It is not easy but worth its weight in gold.
I agree with Claudia and know the Mod Quad is basically based on very old surgeries that have been around a heck of a long time.
Aside from having to watch your precious child being injured for life.....having to sort through conflicting information and sometimes misleading information, is the next most emotionally challenging part. Just do your homework big time and question, question, question.
Good luck to you.
Lisa
I agree with Claudia and know the Mod Quad is basically based on very old surgeries that have been around a heck of a long time.
Aside from having to watch your precious child being injured for life.....having to sort through conflicting information and sometimes misleading information, is the next most emotionally challenging part. Just do your homework big time and question, question, question.
Good luck to you.
Lisa
Re: Undo my daughter's surgeries?
At least as recently as 2007 (according to Dr. Nath's book and published papers) Dr. Nath does the "Mod Quad" muscle transfers distinctly differently than the rest of the BPI surgical community. Specifically, he attaches the transferred teres major and latissium dorsi muscles near the ORIGIN of the teres minor muscle (down near the bottom of the scapula) and not the insertion point of the teres minor muscle (into the humerus) as do most other surgeons. If this is still the case, I imagine this would be why he is suggesting redoing the tendon transfers according to his approach.
I have no wish to start an argument about which approach to the lats/teres major tendon transfer is better, only to point out that they can be performed quite differently. If it is the case that Dr. Nath's current method of doing this tendon transfer is significantly different than what your daughter has already had, it would be understandable that he would want to bring her previous surgery in line with his approach.
I would ask him specifically what he would want to redo or change about your daughter's previous surgery, and go from there.
Kate
I have no wish to start an argument about which approach to the lats/teres major tendon transfer is better, only to point out that they can be performed quite differently. If it is the case that Dr. Nath's current method of doing this tendon transfer is significantly different than what your daughter has already had, it would be understandable that he would want to bring her previous surgery in line with his approach.
I would ask him specifically what he would want to redo or change about your daughter's previous surgery, and go from there.
Kate